Learning from and about cancer (chronic lymphocytic leukemia or CLL) by Dr. Brian Koffman

What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com

Sunday, September 25, 2016

Frontline Therapy for CLL (chronic lymphocytic leukemia), And on Stress and Living Long

The
next issue of The CLL Tribune will be available on Wednesday. It’s hard to
believe it’s been a year since our first issue. Stay tuned for a special email
alert!

A CLL Doctor List is posted in our CLL
Toolbox. This list is composed of CLL physicians recommended by our readers. Thanks to those who have provided
updates and additions since we posted it. We’ll be incorporating them soon! You
can access it here. http://cllsociety.org/toolbox/cll-doctors/

It is not a vetted list, but a list from the readers.

I am in Ohio now for my every 12 week rendez-vous with Dr. Byrd and the team from OSU to check on the status of my tiny resistant clone.

I am anticipating more good news- that things are all stable, but it is always a bit nerve wracking waiting for my lab results. My palpable nodes remain small, but I am tired.

I have been under terrible stress related to my work as a family doctor. That paid work, which I love and hope to continue for many years if at all possible, supports all my activities as the unpaid volunteer medical director of the CLL Society.

I am wholly unconvinced that stress makes CLL worse. If it did, mine would have exploded by now.

From here, I fly to Tampa to meet with Dr. Javier Pinilla-Ibarz out of Moffitt to look at ways we can work together to help CLL patients and set up a support group.

Here's a little cool travel news- completely unrelated to CLL.

Guess who was standing next me in the custom lines when we returned to LAX from Lisbon?

I was not more than 5 feet away from Mic Jagger who looked thin and fit and very healthy. As I said, maybe stress and a frantic lifestyle is good for you.

We’re
pleased to announce that we’ve posted a CLL
Doctor List in our CLL Toolbox. This list is composed of CLL physicians
recommended by our readers. We appreciate all who contributed to the list.
Thank you! You can access it here. http://cllsociety.org/toolbox/cll-doctors/

Live in the Charlotte, NC Area? A new CLL Patient &
Caregiver Support and Education Group will be starting in partnership with the
Levine Cancer Institute – Morehead in Charlotte,
North Carolina. The first meeting will take place on Tuesday, October 18th at 6:30 PM. Patients and family caregivers
are welcome. Find out more about dates and
registration here.

Live in Tampa, FL? Another NEW CLL Patient &
Caregiver Support and Education Group will be starting in Tampa this fall: Tentative
Meeting Date November 1st at Moffitt Cancer Center. Stay tuned for
details!

If
you’re aware of other CLL Patient Support Group meetings, let us know and we’ll
post them. Thanks!

Patient Education Meetings

From
time to time, we will make you aware of in-person Patient Education meetings
coming up for those of us affected by CLL and lymphoma, specifically:

·Wednesday, September 21st at 6
PM at the New York Marriott East Side in New York City: The Lymphoma Research Foundation
will be hosting Updates on Chronic
Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the
Doctor series.Rick Furman from New
York Presbyterian – Weill Cornell Medical (also part of the CLL Society Medical
Advisory Board) is the featured speaker.You can find out more information and
register here. Dinner
will be served and there is no charge to attend.

·Saturday, October 8th
at 9 AM at the Teaneck Marriott at Glenpointe: The Leukemia and Lymphoma
Society will be hosting their New
York/New Jersey Metropolitan Area Blood Cancer Conference. Dr. Anthony Mato
from the Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA
will be speaking during the CLL breakout session. You can find out more information and
register here.
Breakfast and lunch will be served and there is no charge to attend. Parking is
also complimentary.

Heads Up! The CLL Society has become
aware of a series of unbranded patient education meetings coming up in
September and October (with a few more to come in November and December). CLL
patients will share their personal stories, and local CLL experts will be
providing a talk on the basics of CLL. A complimentary meal will be provided
and parking is free. You are welcome to bring a guest.

One
member of the CLL Society will be at each meeting to show a brief video and
give a talk about the impact support and education groups have had on their CLL
journey. We will provide practical tips and support for setting up a local CLL
group and will stay afterwards to meet with attendees who may be interested in
participating in a support group in those areas. We look forward to meeting you
there. After tonight’s meeting, the next 8 confirmed meetings are:

·Wednesday, September 21stin Madison, WI.
More details in the flyer. Access it here.

·Saturday, September 24thin Framingham,
MA. More details in the flyer. Access it here.

·Thursday, September 29thin Portland,
OR. More details in the flyer. Access it here.

·Tuesday, October 4th in Phoenix, AZ. More details in
the flyer. Access it here.

·Thursday, October 6th in Park Ridge, NJ. More details
in the flyer. Access it here.

·Tuesday, October 11th in Bloomington, MN. More
details in the flyer. Access it here.

·Tuesday, October 25th in Golden, CO. More details in
the flyer. Access it here.

·Saturday, October 29thin San
Francisco, CA. More details in the flyer. Access it here.

This is a really important topic that has been badly misunderstood and highly recommend you take a look at the interview.

We are
pleased to announce that a new CLL
Patient & Caregiver Support and Education Group will be starting in
partnership with the Levine Cancer Institute – Morehead in Charlotte, North Carolina. The first meeting will take place on Tuesday, October 18th at 6:30 PM.
Patients and family caregivers are welcome. Find out more about dates and
registration here.

Another NEW CLL Patient &
Caregiver Support and Education Group will be starting in Tampa this fall: Tentative Meeting Date November 1st at
Moffitt Cancer Center. Stay tuned for details!

From
time to time, we will make you aware of in-person meetings coming up for those
of us affected by CLL and lymphoma, specifically:

·Monday, September 19th
at 10 AM at The Grand Central Hotel in Glasgow, Scotland: The CLL Support Association
(CLLSA) is hosting a 2016 Glasgow Members Conference.Dr. Alison McCaig a consultant in the haematology department of
the Royal Alexandra Hospital will be the featured speaker. You can find out more information and
register here. Lunch
and refreshments will be served and there is no charge to attend for members.

·Wednesday, September 21st at 6
PM at the New York Marriott East Side in New York City: The Lymphoma Research Foundation
will be hosting Updates on Chronic
Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the
Doctor series.Rick Furman from New
York Presbyterian – Weill Cornell Medical (also part of the CLL Society Medical
Advisory Board) is the featured speaker.You can find out more information and
register here. Dinner
will be served and there is no charge to attend.

·Saturday, October 8th
at 9 AM at the Teaneck Marriott at Glenpointe: The Leukemia and Lymphoma
Society will be hosting their New
York/New Jersey Metropolitan Area Blood Cancer Conference. Dr. Anthony Mato
from the Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA
will be speaking during the CLL breakout session. You can find out more information and
register here.
Breakfast and lunch will be served and there is no charge to attend. Parking is
also complimentary.

Heads Up! The CLL Society has become
aware of a series of unbranded patient meetings coming up in September and
October (with a few more to come in November and December). CLL patients will
share their personal stories, and local CLL experts will be providing a talk on
the basics of CLL. A complimentary meal will be provided and parking is free.
You are welcome to bring a guest.

One
member of the CLL Society will be at each meeting to show a brief video and
give a talk about the impact support and education groups have had on their CLL
journey. We will provide practical tips and support for setting up a local CLL
group and will stay afterwards to meet with attendees who may be interested in
participating in a support group in those areas. We look forward to meeting you
there. After tonight’s meeting, the next 9 confirmed meetings are:

·Saturday, September 17thin Long Island,
NY. More details in the flyer. Access it here.

·Wednesday, September 21stin Madison, WI.
More details in the flyer. Access it here.

·Saturday, September 24thin Framingham,
MA. More details in the flyer. Access it here.

·Thursday, September 29thin Portland,
OR. More details in the flyer. Access it here.

·Tuesday, October 4th in Phoenix, AZ. More details in
the flyer. Access it here.

·Thursday, October 6th in Park Ridge, NJ. More details
in the flyer. Access it here.

·Tuesday, October 11th in Bloomington, MN. More
details in the flyer. Access it here.

·Tuesday, October 25th in Golden, CO. More details in
the flyer. Access it here.

·Saturday, October 29thin San
Francisco, CA. More details in the flyer. Access it here.

If you have CLL/SLL, a very heterogeneous subtype of lymphoma, know whether you have an indolent slow growing type, or an aggressive fast progressing type.

The vision of the CLL Society is to act to help shape a smarter, brighter future for those with CLL and related B cell blood cancers by encouraging and supporting smart patients, smart providers, smart healthcare delivery systems, and smart therapies.

If you are able to help the CLL Society to continue to educate your fellow patients so they can get the best possible care, consider making a donation here.

Wednesday, September 7, 2016

Well,
I’m packing my bags again in preparation to speak at the European School of
Hematology meeting being held in Portugal this coming weekend and then will
take a few days R&R before heading back to what looks to be a really busy fall.
Busy is good!

This
week in the Conference Coverage section, we’ve posted an interview with Dr. Susan
O’Brien out of UCI where we discussed an interesting abstract from ASCO 2016.
It presents the pre-clinical data for a new molecule, GDC-0853 that has
different way to bind to and block the BTK pathway, the same pathway that
ibrutinib blocks.You can view that
interview here. http://cllsociety.org/2016/09/asco-2016-dr-obrien-gdc-0853/

We are
pleased to announce that a new CLL
Patient & Caregiver Support and Education Group will be starting in
partnership with the Levine Cancer Institute – Morehead in Charlotte, North Carolina. The first meeting will take place on Tuesday, October 18th at 6:30 PM.
Patients and family caregivers are welcome. Find out more about dates and
registration here.

Another NEW CLL Patient &
Caregiver Support and Education Group will be starting in Tampa this fall. Stay tuned for details!

From
time to time, we will make you aware of in-person meetings coming up for those
of us affected by CLL and lymphoma, specifically

:

·Monday, September 12th
at 6 PM at The Westin Seattle in Seattle, WA: The
Lymphoma Research Foundation will be hosting Updates on Lymphoma and Treatment Options as part of their Ask the
Doctor series.John Pagel from The
Swedish Cancer Institute is the featured speaker.You can find out more information and
register here. Dinner
will be served and there is no charge to attend.

·Monday, September 19th
at 10 AM at The Grand Central Hotel in Glasgow, Scotland: The CLL Support Association
(CLLSA) is hosting a 2016 Glasgow Members Conference.Dr. Alison McCaig a consultant in the haematology department of
the Royal Alexandra Hospital will be the featured speaker. You can find out more information and
register here. Lunch
and refreshments will be served and there is no charge to attend for members.

·Wednesday, September 21st at 6
PM at the New York Marriott East Side in New York City: The Lymphoma Research Foundation
will be hosting Updates on Chronic
Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the
Doctor series.Rick Furman from New
York Presbyterian – Weill Cornell Medical (also part of the CLL Society Medical
Advisory Board) is the featured speaker.You can find out more information and
register here. Dinner
will be served and there is no charge to attend.

·Saturday, October 8th
at 9 AM at the Teaneck Marriott at Glenpointe: The Leukemia and Lymphoma
Society will be hosting their New
York/New Jersey Metropolitan Area Blood Cancer Conference. Dr. Anthony Mato
from the Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA
will be speaking during the CLL breakout session. You can find out more information and
register here.
Breakfast and lunch will be served and there is no charge to attend. Parking is
also complimentary.

Heads Up! The CLL Society has become
aware of a series of unbranded patient meetings coming up in September and
October (with a few more to come in November and December). CLL patients will
share their personal stories, and local CLL experts will be providing a talk on
the basics of CLL. A complimentary meal will be provided and parking is free.
You are welcome to bring a guest.

One
member of the CLL Society will be at each meeting to show a brief video and
give a talk about the impact support and education groups have had on their CLL
journey. We will provide practical tips and support for setting up a local CLL
group and will stay afterwards to meet with attendees who may be interested in
participating in a support group in those areas. We look forward to meeting you
there. After tonight’s meeting, the next 10 confirmed meetings are:

·Tuesday, September 13thin Orlando, FL.
More details in the flyer. Access it here.

·Saturday, September 17thin Long Island,
NY. More details in the flyer. Access it here.

·Wednesday, September 21stin Madison, WI.
More details in the flyer. Access it here.

·Saturday, September 24thin Framingham,
MA. More details in the flyer. Access it here.

·Thursday, September 29thin Portland,
OR. More details in the flyer. Access it here.

·Tuesday, October 4th in Phoenix, AZ. More details in
the flyer. Access it here.

·Thursday, October 6th in Park Ridge, NJ. More details
in the flyer. Access it here.

·Tuesday, October 11th in Bloomington, MN. More
details in the flyer. Access it here.

·Tuesday, October 25th in Golden, CO. More details in
the flyer. Access it here.

·Saturday, October 29thin San
Francisco, CA. More details in the flyer. Access it here.

About Me

BkoffmanMD@gmail.com
A family doc and husband of 1 and father of 4 and grandfather of 3 who loves his family and his work. I live with no TV and no microwave, but wouldn't last a minute without friends, art, music, books and the beach. Hockey, good jokes and exotic travel are pretty important too. Writing, Talmud and Zen give meaning to my life. My diet is organic vegan, often raw. I hope the blog makes the load lighter and the path both safer and more fun for those who read it or are going to similar places. I want to help. I crave your comments. If you are new to the blog, check out the portrait my son Will painted (it is the first post), and my very first text post.